Preventative mastectomy vs. top surgery - advice please!

Hello firesmoke, I don’t have any experience relating to top surgery. I found out I had Brca 1 a few years ago and from meetings with my breast surgeon it was mentioned nipple preservation is a choice, some people prefer to have tattoos done instead. If you’re looking to reduce as much tissues as possible this would be an option. I imagine top surgery would involve some kind of implant whereas without reconstruction you’d have the scars more visible.

Take care,

i really relate to this, i found out i am brca 2 positive and i already knew i wanted to go with miles berry for my top surgery. (im non binary) and i feel like this has threw my plans off and has confused me a ton with knowing what this means for my transition 

Hey! Firstly, I'm so sorry to hear that.

I can tell you a little bit about my experience and decision further down the line now, if that's helpful? So, I had a month's wait between finding out and having my follow-up with my genetic counsellor (I'm with the team at Great Ormond Street). I was very stressed then, as I didn't know whether I'd be offered a preventative mastectomy, seeing as I'm 20. Fast forward to late September, and my genetics counsellor was amazing. Knowing my trans identity and feelings about my chest, coupled with my risk level (74% chance of developing breast cancer), she offered to refer me to a surgeon of my choice. I decided to pick Joanna Franks at UCLH because I contacted the charity Flat Friends (for people who opt to have a flat closure mastectomy) and they spoke very highly of her. I've now been referred, and apparently it's a 1-2 year waiting list - I imagine I'll be at the upper end of that due to my age and the fact that it's a preventative surgery.

It was a straightforward choice for me once I was offered it (free top surgery!), as even if the results are a bit less clean than Miles Berry's work, and even though I won't have nipples, I won't have to worry about the prospect of developing cancer in any of the tissue that would be 'left behind' by top surgery - which might mess up the tidier results after all...

I'm happy to chat about it if you'd like - there's next to no resources for people like us! And I'd really reccommend being open with your clinicians about your feelings towards your chest & your identity if you feel comfortable doing so - it's helped me a lot.

Take care :))

Thank you for this :)) definitely considering nipple tattoing sometime down the line. As you can see from my comment below, I'm feeling a lot better about things and have a plan in place.

hi i just had my first appt with my genetics councillor on the 3rd of jan and she was super lovely about my identity too, im still waiting for them to confirm my 23andme results but with my family history it is more than likely a real positive. she says the hospital nearest to me has a waiting list of at least a year and i couldn’t help but feel happy that i wont have to wait years to save for top surgery. 

I'm so glad!! Shoot me a message if you want to keep in touch? :))

Hello, I have no experience with your initial planned operation, but a dmx is to me sounding very much the same, both ops can’t remove 100% of breast tissue and nipples can be left after a dmx ( nipple sparing) but bc can occur in the nipple too so tattoos maybe a good option for you reduce your risk further. It’s a very personal choice. Good luck